ALS-stricken veteran still feels valued

On the back patio of their San Luis Obispo home, Pam Zirion uses a syringe to inject a light green, high-calorie formula with liquid vitamins and crushed pills into her husband’s gastric feeding tube, and talks about their courtship.

Pam, 62, met Kirk Zirion, 63, in a small town in the Sierra foothills in 1969, after he returned from Vietnam. “He would throw snowballs at me,” she says, and smiles lovingly at the man who is now alert but unable to speak, swallow, or move due to symptoms of amyotrophic lateral sclerosis, or Lou Gehrig’s disease.

A 2005 study at Harvard University found that men with any history of military service in the last century are nearly 60 percent more likely than civilian men to get ALS. Other studies have determined that Gulf War veterans were approximately twice as likely as other veterans to develop ALS.

After diagnosis, most patients survive an average of two to five years.

ALS is a rare degenerative disease of motor neurons in the brain and spinal cord that — while allowing the intellect to remain sharp — leads to rapid weakening and eventual paralysis of all voluntary muscles.

“It’s like being trapped in your own body,” said Pam Zirion.

Kirk was diagnosed in 2007, after his family noticed him slurring his speech and he felt uneasy on his feet. He believes his disease was caused by toxin exposure during Navy service in Vietnam, where between 1965 and 1969 he often worked offshore in a ship’s engine room.

He also patrolled inland waterways, pulling the dead bodies of soldiers from rivers that may have been pooling with the defoliant Agent Orange.

However, the causes of ALS are still unknown. Research so far has linked Agent Orange exposure to conditions including diabetes, Hodgkin’s disease, and cancer — but not ALS.

Although no specific link between the conditions of military service and the development of ALS has yet to be identified, the Department of Veterans Affairs acknowledged in 2008 that military service is “associated” with ALS by designating it a “presumptive compensable illness.”

While most veterans seeking disability compensation must prove that military service caused their disabilities, veterans with ALS will have to prove only that they have the disease.

Tom Pamperin, deputy director of compensation and pension services for the VA, said, “The populations affected are so small and the disability is so devastating that it is unlikely they will ever identify an ultimate cause.” So the VA “felt it was appropriate to give veterans the benefit of the doubt.”

According to the ALS Association, two people per 100,000 will develop ALS. Pamperin said that of about 23 million living veterans, it is estimated that 600 per year will seek compensation for ALS. Spouses of veterans who have died from ALS can also apply for compensation.

Four months after applying in October 2008, Kirk Zirion was approved for full disability compensation of up to $6,800 per month. However, Pam said, “It’s been a struggle and a fight.” A request for an adaptive vehicle wasn’t approved until the VA received a letter from Lois Capps, and a request in May for an adaptive bathroom was not approved until the Tribune inquired this week.

Pam said the VA’s assistance, though sufficient, is too slow for victims of such a rapidly degenerative disease. However, VA representative Pamperin asserted that, “If the veteran (is in a) terminal state, we do walk those claims through.”

Pam and Kirk married in 1971, and moved to San Luis Obispo in 1975 to open a photography business on Higuera Street called Horizon Studios. Kirk closed the business in 1985 to pursue freelance photography and later worked in the pre-press room of The Tribune and as a diesel mechanic.

Pam says Kirk never spoke much about his service in Vietnam — where he and his two brothers all served. After he lost the ability to speak, and before he lost the motor control to bring his finger to tap letters on a touch screen, he wrote messages on a Dynavox assistive computer:

“You make my heart sing.”

“ALS is a death sentence.”

“Don’t worry about me baby I ride side saddle.”

Members of the Zirions’ bicycle club — from which he was forced to resign in 2007 due to symptoms of ALS — visit several times a week to read to him. A hospice volunteer visits weekly to provide Pam with a much-needed respite. In October, Pam brought Kirk to Yosemite, where she was surprised by easy handicap accessibility.

When asked if he feels valued as a U.S. veteran this Veterans Day, Kirk’s face strains into a grimacing smile. His eyes, which always appear clear and friendly, widen. As his jawbone quivers beneath the skin, he groans and forces the faintest nod.

Pam says that means “Yes.”

ALS assistance

A local ALS (Lou Gehrig’s disease) support group meets from 2 to 3:30 p.m. every third Saturday at the French Hospital auditorium, 1911 Johnson Ave., San Luis Obispo. Call 674-4162 for details.